Portable Oxygen.

[purdeyspringer]

Hi everyone, hope your all keeping well 😊. Just want to ask if thereis anyone having the same thoughts as me.I have 40% lung function, stage 4 Emphysema and I have portage oxygen, well I use it when exercising (not often sorry to say) but going up, down stairs and when I get breathless, I put my Oxymeter on which usually registers around 83%, then after using my oxygen it can go up to 98% , but as soon as I stop the oxygen my reading goes back to between 85 - 90% and my breathing is not much better. Does anyone else have this happen ??

[Biker88]

Hi, I use my portable oxygen as soon as I get out of bed or a chair, I use it when getting washed and dressed, doing washing up. My resting O2 is 88-92 which is the target my consultant set for me. Walking upstairs on air my O2 can drop into the 70s but on O2 it normally sits around 88-97. O2 won’t stop you getting breathless but I find it does give me more energy, the important thing is that low O2 can lead to organ damage so any time your levels drop use the O2

[PaulineHM]

Hello,

Us folk with COPD/Emphysema are usually asked to maintain oxygen levels of 88-92% . Do you know what your 02 prescription is ? If you do then you would be advised to use your oxygen as prescribed.

I use static oxygen concentrator to head upstairs. Do you have one of those ?

Supplementary oxygen will increase the quality of your life and potentially extend it too, I would use it if I were you.

Go well

Pauline

[purdeyspringer in reply to PaulineHM]

Thank you, yes I do use it all the time, but to be honest I don't find it gives me more energy as with my inhalers it's only temporary relief. I have never been given a target by my specialist or nurse, my hospital doctor doesn't want to see me for 2-3 years my nurse twice a year. I have 40% lung damage they said there is nothing more they can do to improve my lung condition, no treatments I can be considered for as they have had meetings with big boys in Barts London. I do not want permanent home oxygen as it would then make me housebound, and at the moment I can get about with my scooter occasionally. Sorry to sound so woeful, my own fault for smoking in the first place. Thank you for your advice, much appreciated. Keep well.

[PaulineHM in reply to purdeyspringer]

Ok, thanks for clarifying your situation.

Oxygen won’t especially help energy levels, although will keep the body in a better condition, as an exercise programme will as well. I assume you have been offered a PR course ?

Sorry you don’t have health care support there. I assume you have a home oxygen nurse ? I am seen annually by an oxygen nurse to review my prescription. I was using an Inogen and a static concentrator for many years. Don’t have a respiratory nurse though and only recently seen by a Consultant after stubborn lung infections.

I still have a static concentrator and liquid oxygen in flasks and get out and about quite well ,especially in the warmer weather. Diagnosed 22 years ago and oxygen for last 8 years.

Why not try a static concentrator at home and see how you get on with it ?

Smoking ? Please don’t shame yourself for having smoked and neither should anyone else do that to you either. COPD can affect those who have never smoked and not affect those who have. It is a recognised addiction to nicotine.

If you use Facebook there is a page called “At home with Oxygen U.K.” It is a very active and supportive page. You can make a request to join, answer the joining questions and no doubt you will be accepted.

Go well.

Pauline

[Maggity in reply to PaulineHM]

Thanks Pauline x

[purdeyspringer in reply to PaulineHM]

Hi thank you for your reply, no I don't have an oxygen concentrator, what is that for ? I have my Imogen portable machine, which I don't find gives me enough oxygen and I am just one point under for having home oxygen, which I think will restrict me to stay at home even more. I use my portable as much as need be, in bathroom, etc, but it is a bit to heavy for me to carry while I do household chores.

[PaulineHM in reply to purdeyspringer]

To be clear an Inogen POC is home oxygen as opposed to in hospital oxygen.

A static concentrator is a machine which is on wheels ( can be moved but not far ) and is used in the home. I have 15 meters ( 50ft ) of oxygen tubing attached so I can go anywhere in the house (or garden when I am on my feet ). No carrying machines at all. It is set at continuous flow so not as an Inogen which is on pulse demand only.

Can you not discuss your oxygen needs with your local NHS Oxygen service ? They can answer your questions as to your particular personal oxygen requirements. Just ask, there is no commitment to take up anything...simply investigate. then you will be able to make a more informed decision.

Go well

Pauline

[purdeyspringer in reply to PaulineHM]

So glad for your advice, I am not happy that my oxygen nurse has not discussed these things with me. I will be sure to speak to her. Thank you again.

[purdeyspringer in reply to PaulineHM]

Hi again, my oxygen nurse put my on Inogen which as you probably know only lasts an hour, it's set on 5 which is the highest level, I don't feel it's enough for me, when I spoke to her she said oh give it time . Think I need to speak to her again, really appreciate your advice thanks .

[PaulineHM in reply to purdeyspringer]

Ok, good plan to speak with her. Not sure that 'giving it time' is really a very acceptable response when it comes to oxygen levels. They are either ok or they are not.

When did you last have an ear lobe test and a six minute walking test/oxygen assessment ? As I mentioned I have one every year and my 02 prescription is then adjusted accordingly if needed.

With appropriate oxygen levels I am am to keep fitter and healthier for sure.

Do let us know how you get on won't you ?

[Maggity]

Hi there, our bodies do not retain the oxygen so after you stop using it your levels will drop back down very quickly again. The other thing is that oxygen doesn't always help much with breathlessness, it is given more to protect your organs.

[purdeyspringer in reply to Maggity]

Thank you so much for your reply, that is what I thought, so frustrating at times. Keep well

[AsthmaandLung Administrator]

Hello purdeyspringer,

If you are in the UK, please call us on 0300 222 5800 (Mon- Fri, 9am to 5pm) and we will be happy to put you in touch with one of our friendly respiratory nurses who will be happy to give you advice about managing your condition.

Thank you and take care,

Helpline Team

[purdeyspringer in reply to AsthmaandLung]

Hi yes I am in Essex. I do have a Respiratory nurse, my last appointment was a phoned appointment. I do all she tells me, I have done the classes before, but the last one I did a couple of classes then stopped due to weather and other factors, but I do exercises at home at times. I will get back in touch with my nurse and see what else she can do otherwise I will definitely call you, thank you for you advice.